Calling All with Tumors 6 cm +
Comments
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I went annually for mamos and never missed one. So when they thought they saw something and confirmed it was 1.7 on an ultrasound, sent me for a biopsy and then a MRI, which showed it as 2.2, I was not freaked out. I figured, and said to everyone, I was clear last year so I know we caught it early.
I was shocked when it turned out to be 6.2 and they said I'd likely had it for years but it didn't show up on the mamo! Turns out ILC often doesn't show up until it's quite large.
2 months before my mamo, I had even seen my Gyn, who completed a breast exam and found nothing.
Turned out, the cancer was against my chest wall, so my breast was covering it. So there was no lump, no pain, no indication. Except I was unusually tired but had chalked it up to working too hard and not getting enough sleep.
4 months before, I was so wiped I cancelled cooking Christmas dinner, something I've never done but now in retrospect that was a sign.
I think routine ultrasounds should replace mamos, with a baseline at 35, and yearly starting at age 40.
I'm so afraid for my 21 yo daughter now and am going to lobby for her to do this when she is older.
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Welcome Eve1956: I am continually amazed at the tests and exams that miss these large tumors. I am sure you are seeing that trend through this thread.
lovinmomma: I love it when women can stay home with their children and enjoy it and do it well. I stayed home with mine until my oldest was three and the youngest was a year and a half. My oldest has Asperger's and several other labels. When he was around three, I had such hard time with his energy level, I just wanted to get back to work thinking that I was just not good at this "mom" thing. Later, as I started understanding what was really going on, we learned a lot about how we could work with him and bring him along with his deficit skills and emotional behavior. He is now 15 and my daughter, 14, and doing really well.
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I had found my lump. Actually I had dense breasts and always had a "hard spot" in my left breast since I was about 30. It never grew or did anything, until I hit 45. I then felt it had an edge to it...weird, so went in and sure enough, it was cancer and the tumor was described as 3.5 to 4cms. When I went to get a second opinion some three weeks later, the other hospital radioligist decided it was 7 cms? So I am not sure what size mine was, but because it was over the "magic" number of 5cms I was placed in a later stage which meant I got everything thrown at me. The good news is with neoadjuvant chemo my tumor shrunk to 7mm which is almost a complete response. But I wasn't happy for long. I had a breast surgeon who ignored that and took 16cms out of my breast. And most of what she took out was not cancerous according to the pathology report, and since she is such a horrible doctor she never explained why she did what she did or GOD FORBID ASK what I wanted her to do...(I am not illiterate, she should have told me what she had found and described my options, her recommendations and allowed ME to decide what was to be done to MY body for MY LIFE! at the time of surgery. To make matters worse, her boss, another BS said she would not have taken so much tissue.) So the doctors are adding to the size of the actual tumor with anything that looks suspicious...just another illustration of how inaccurate and how ineffective modern medical science is. We haven't gone much further than the use of leeches in my opinion.
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When I went for biopsy the 1st Pathology said I had 2 kinds of cancer, in 2 different areas. IDC in 1 and "favor lobulor in the 2nd. The BS was RUSHING me to schedule surgery and gave me option of a lump or MX but said I was good candidate for a lump. They did blood work right in their office, sent me next door for a chest x-ray and had me scheduled for surgery in another 10 days!
Maybe it was the rushing, and so much information being thrown at me, I told her I wanted to get a 2nd opinion and could she recommend a couple people. She gave me the name of the doctor in practice with her and said "I could also give you the name of a brilliant surgeon down at Yale but she's a cold hearted bitch." Then she went on to say, BSs are BSs and this was a pretty straight forward surgery and the time for me to be seeking a 2nd opinion would be when I was deciding on an Oncologist, but not now. I smiled and said I still wanted to get a 2nd opinion and would like the name of the "cold hearted bitch down at Yale". She turned beet red and gave it to me.
Saw the 2nd BS, found her to be very professional but also warm and forthcoming. First thing she wanted to do was have Yale's Pathologists look at the slides. There report came back that both areas were the same, both ILC! We talked and she said she often finds with ILC, the size turns out bigger than what what the tests reveal and she often sees tumors as big 5cm, even though the tests say otherwise.
She too gave me both options, lump or MX but given I had ILC, if it turned out to be large, there would be a lot of breast tissue missing, and with lumpectomies, there is no option for reconstruction. WHAT???? BS1 never mentioned that!
That made my decision, and when it was all over and BS2 came in to see me she said I had made the right decision, due to the 6+cm tumor size.
So it always pays to get a 2nd opinion and follow your gut! Seems like some doctors are very knowledgeable, while others are still on the learning curve and we're their Guenna pigs!
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Any doctor that is put off by a 2nd opinion (or calling one a cold hearted bitch) is unprofessional… that behavior should be a sign that you must get a 2nd opinion IMO!
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I found my lump, but did not get excited about it at first. I have a history of lumps and dense tissue. My mammograms had been normal, I had one 6 months before feeling the lump. I probably should have gone to the dr sooner, found the lump in February and did not see the dr until May when I realized it was growing and fast. It was about the size of a pea when I first felt it. When I finally got to the dr. I knew it was bad by the look on her face. When I went for the mammo, I knew, but they would not say anything until I had a biopsy. Waiting was very hard, but fortunately the news came within two days of the biopsy.
I have no complaints about my doctors. The hospital has a BC center where all the docs work as a team. I felt informed and well cared for. I am going to another hospital for radiation because it is closer to home, but it is also a BC center and all of the drs. speak highly of each other.
Initially I thought my tumor was 4.5 cmm because that is what the biopsy pathology report said. I did not realize it was 7 cmm until I received the second MRI report after chemo. Chemo got all of it, there was no trace of it. The BS removed 2 cmm of tissue and the margins were clear. I should not have any caving from radiation because of the way she did the surgery. My left breast is smaller than the right now, but I don't think anyone can tell unless they stare at me. I don't have large breasts either (34B) so my chest is not something that calls attention anyway.
Eve and pixel, it is sad to hear that there are such unprofessional drs out there.
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Speaking of large tumors, I just realized something that would be obvious if you were calculating volumes in 10th grade geometry, but hadn't occurred to me with regard to our tumors: Namely a 6 cm tumor is not merely six times bigger than a 1 cm tumor.
Assuming that both tumors are roughly spherical, a 6 cm tumor is actually 217 times bigger than a 1 cm tumor! Don't believe me? Try the math yourself here:
http://www.calculateme.com/cVolume/VolumeOfSphere.htm
That's a major mind blower.
I couldn't find a chart on the 'net with spheres to compare, but I did find this childbirth dilation chart that gives a sense of just how huge a 6 or 7 cm tumor really is - at least in two dimensions. Six to seven centimeters is like a tennis ball. And you ladies with 10 cm tumors basically had grapefruit sized tumors (!)
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p.s. My tumor was apparently a series of tumors or "skip lesions." The largest was 5 cm, but the entire involved area was 13 cm.
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I too, found my lump while in the shower. I had just had my annual exam with a full clinical breast exam 4 months prior and nothing, nothing on self-exams, either until 12/13. Then all the sudden I had a 2-3 cm long lump in my breast. It turns out I have extensive DCIS and IDC in my right breast that just keeps growing like crazy thanks to the HER2+ status. I was diagnosed on 12/23. I live in AK and had to travel to Seattle to be seen/have the biopsy. I went back home to spend Christmas with my kids and then I had to wait until 01/06 to come back down, get the rest of my scans, and meet with my team of docs. They told me that the total area of involvement is over 13cm-WOW! From zero to huge in less than a month. So far my breast MRI, bone scan and axillary u/s came back negative. Had my CT and brain MRI last week, but no news yet. I'm meeting with my MO on Tuesday and getting my first round of AC. Praying without ceasing that this tumor will just melt away!
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MMTOMH, I hope they also start you on Herceptin and ask about adding Tykerb.
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MMTOMH they can't give you Herceptin with AC but they can give it to you after, usually with one of the taxanes (taxol or taxotere). If the plan isn't to give you Herceptin I highly recommend you seek a 2nd opinion. The only time they don't give someone Herceptin is if they have heart issues. If you had heart issue they wouldn't be giving you A of AC.
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Lago, I did continue Herceptin with the adriamycin. But I am also one of the rare ones whose MUGA showed increase in heart function while on chemo and Herceptin. I do agree that heart must be checked, and that if MMTOMH is on AC then her heart function should be good.
Herceptin and Tykerb for Her+ definitely! -
I had mixed IDC and DCIS in right breast multiple tumours...largest 6cm & then a surprise finding of small DCIS and LCIS in left breast after bilateral mast...age 38 had egg sized lump which grew from grape sized lum over two years which i thought was elftover from nursing and pregnancy.
chemo, oopherectomy, rads, arimidex 5 years and now nothing. Michelle
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Scuttlers and Lago -
Yes, I am getting herceptin. The plan is AC every 2 weeks x 4 and then Taxol/Herceptin every week x 12. Then I will have my surgery, then rads and at some point we pick up the Herceptin again so that I have a total of one year on that. What is Tykerb?
Scuttlers-I was born in Nampa!
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MMTOMH I don't believe Tykerb with Herceptin is standard care for early stage breast cancer yet but some of the trials seem to show really promising results. I didn't get Tykerb. It is used for advanced stage HER2+
Your treatment plan sounds like one of the typical protocals for treating HER2+. You can ask your onc about Tykerb but I do believe you might have to be in a trail to get it.
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I'm receiving care at SCCA, so I really feel like I'm on the cutting edge of whatever is available. I meet with my MO tomorrow and I'm sure if I'm eligible for any trials she will let me know.
Lago- did you not have rads?
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No I did not. I was in a gray area. If my nodes were positive or if I didn't get the first level out (10 nodes on the IDC side) I bet my rad onc would not have given me a pass. My margins were clear but close. I also think if I wasn't doing 5 years of Anastrozole I might have to do rads too. I'm ER/PR+ so I get to do the estrogen sucking drug for 5 years.
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Yeah, it's so hard to really determine if one thing is any better than the other. I'm getting the whole shebang, but the 5 years...I just hope it all does what it's supposed to do and I don't have to go through this again. I want to be healthy for my babies and myself! I'm considering doing the bmx too.
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MMTOMH the thing is there is a percentage of us that only need surgery (based on staging). Problem is they don't know who that is. In my case there was a 40% chance I didn't need anything other than surgery… but that's not good odds so I did the chemo and take my estrogen sucker. IMO I'm good unless told otherwise.
The bmx was really the best course since I had no choice in the IDC side (small boob + big tumore = MX). The other side showed 4 suspicious areas, one that my BS was concerned about. He said it would have to be biopsied every year. It ended up being LCIS so he was right about the yearly biopsy. His recommendation after the MRI was to do the BMX… this is after he initially said not needed, didn't like to remove healthy tissue and talked me out of it. Said "lets wait to see what the MRI shows). So glad he did an MRI of both breasts.
But remember our risk of a new secondary is actually lower than mets (unless there's a family history or BRCA gene etc) Yes your risk is higher than someone who never had breast cancer but not quite as high as you think. You will be watched carefully too. Remember that you will be numb, no nipple sensation etc. Once its gone no turning back. You can always have it removed later. I would really discuss this with your doctors and get all the facts. I'm not discouraging at all. I'm quite happy to be rid of mine but I will admit I miss my right nipple
Also remember those of us that are hormone negative (like yourself, not me) usually have a better chance of no recurrance after 3 years. No gaurantee but pretty good. -
Lago- In my right side (the affected side) I have no choice but a mx-nipple must go too. I'm pretty large-breasted and I'm not interested in undergoing a major abdominal surgery in addition to everything else, so flap is out for me. Aesthetically I think I would be much happier with two implants instead of one natural, one implant.
My doctors are recommending that I have genetic testing, although I don't have any family history. They still believe it may be heredity because I'm only 32. I'm pretty sure I will do it because I have 2 daughters to consider.
I hadn't heard about the decreased chance of recurrence after 3 years with hormone negative--does that still apply when you are HER2+? I've heard our prognosis isn't as good when HER2+. Is that because of increased risk for mets related to the high grade? So much to learn. Thanks for helping me on my journey!
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MMTOMH Yes that does apply to HEr2+/hormone negative. It typically, if it's going to recur happens within the first 3 years. I would discuss this with your onc. HER2+ used to have significantly poorer prognosis but Herceptin has changed that. Not 100% guarantee but much better odds statistically. A lot of what you read online is old information. Herceptin has only been standard care for early stage for about 5+ years.
I had genetic testing too although no history in my family. There is an increased risk of having the gene in certain cultures (one of which I fall into). I also have a sister, brother, 1 nephew and 3 nieces so I felt it important to find out. Yes this gene effects men for several types of increased cancer risk too.
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((((Phila))))
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Phila, you are in my prayers. I am sorry you are going through this and I hope you can find some answers soon. Keep us updated.
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♥ ♥ ♥ Phila ♥ ♥ ♥
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Thinking of you Phila... I have a brother-in-law who has been through three kidney transplants, entirely not the same situation at all, but I have some understanding from that. I wish you the best and lots of rest today.
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windlass: I really appreciate your visual guide. It really puts things into perspective on tumor size! Thank you so much for posting that!
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J-Bug here's another visual guide but it doesn't seem to go past 5cm. I know I thought a lime is huge and out tumors are bigger than that.
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Thanks for the link jbug
Found my tumour while doing self excam 10 months after my last clear mammoram... Tumour was about one inch when I first found it.. By the time I had my mammo, stereotactic biopsy, seen MO and treatment plan was decided IT had grown to 7x6x1.5cm.and could feel two swollen nodes.. Had 4 AC treatments and tumour shrunk to where MO could no longer feel it. Then on to 4 DT treatments.. Still on Hercepin (until July 2012) as well as Tamoxifen (5 years) Finished chemo Oct.18/2011 Uni mastectomy Nov. 22/2011
Do not know stage as I had chemo first, know it was very agressive... high grade IDC
Pathology report came back ... no affected nodes but three had abnormall cells... clear margins... Now starting Radiation.
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The MRI I had after 7 core needle biopsies indicated the tumor was 6.7cm. I had a sentinal node biopsy (three taken, sentinel node and 2 others close by) and all were clear. I do have mild lymphedema on side of chest.
I had neoadjud. chemo and the tumor had shrunk less than half and the last MRI said it was "significantly less confluent" which I found out meant it was full of holes and breaking up.
I had bilateral MX and reconstructin in NOLA. I was not convinced that anbody could manage my dense tissue and wondered if it would happen again.Did many of you have very dense breast tissue? I am wondering if many in this group had dense tissue because it makes cancer tumors invisible to mammogram, and sometimes even ultrasound. My tumor, huge as it was, was not seen my mammo, diagnostic mammo, nor ultrasound, just something "murky".
If this was you, check out areyoudense.org - the are doing some great work to "expose the secret of dense breast tissue". -
springtime
I too have dense breast tissue,, might be why my tumour was missed by mammo.
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